Tuesday, August 28, 2012

Emma's Asthma

Emma has wheezed since she was a tiny baby. Her first winter we lived at the pediatrician's office trying a regimen of nebulizer treatments and steroids. Finally, a different pediatrician told me that while the wheezing sounded alarming, her oxygen saturation wasn't really dropping, so I shouldn't be concerned. She called Emma a "happy winter wheezer." And that is what I've told people ever since, "Don't worry about that alarmingly loud wheezing sound coming from my daughter. Her doctor told me she's a happy winter wheezer."

But, while my other three kids outgrew this babyhood wheezing, Emma's has gotten progressively worse. When she had her ear tube surgery last year they almost didn't discharge her because she was wheezing and her oxygen saturations were in the upper 80's. This was the first time I realized that all the wheezing was actually hurting her. And it has continued to worsen. A cold virus sets her wheezing and coughing for weeks now. Exercise throws her into wheezing and coughing fits for an hour or more. More recently her allergies and even stress will set her off.

The past week Emma has wheezed and coughed around the clock. I have given her the rescue nebulizer treatments (like an inhaler, only breathed in a mist for 10 minutes) multiple times, and waited for it to pass, but it isn't passing. For three nights now Emma has slept propped up on the couch, and I have been woken up every few hours by her coughing fits and had to get up to give her another treatment. It was becoming obvious that were were dealing with much more than "happy winter wheezing." So today I finally broke down and took Emma back to the pediatrician's office. (Thankfully there are three different doctors at this practice and we've been making our way around all three of them in rotation. I'm hoping they don't compare notes and find out I have the world's sickest kids.)

Dr. A listened to the history I described and then listened to Emma, who happened to be coughing quite nicely at the moment. I asked her, "So would you call it asthma?"

She looked at me with a "do you really need to ask me that?" look, and said, "I would call it out-of-control asthma!"

Sigh. I'm the world's worst mom. I know every detail about every strange disease known to man and I've missed the most obvious kid malady ever: asthma. But really, having that one pediatrician tell me not to worry about it at all really trained me to overlook the obvious. Alas for poor Emma who probably should have been on asthma meds long ago.

Anyway, the treatment now is three days of oral steroids to dry up the secretions in Emma's lungs that she is drowning in. Also a daily dose of singulair, and nebulizers as needed. We may add inhaled steroids or other meds later if needed.

Here's hoping that makes this winter more bearable for her, and hey, it may just help her speech if she can finally breathe easier.

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About Me

About My Children

Naomi is twelve years old and is living with Bardet-Biedl Syndrome, a rare genetic disorder that can cause kidney failure, obesity, retinal degeneration, and various other symptoms. She also lives with Celiac Disease and multiple dietary sensitivities. Hannah is ten and lives with Celiac Disease and food allergies. Emma is eight and lives with BBS like her big sister Naomi. For Emma, BBS has also caused severe speech apraxia. Toby is seven and lives with one functional kidney. Elijah is four and is completely healthy. They are active, whimsical, and too funny to keep to myself.